Asthma UK Centre for Applied Research: #MyAsthmaStory

Using crowdsourcing through social media to collect data

Melissa Goodbourn is the Research Fellow in Patient and Public Involvement at the Asthma UK Centre for Applied Research (AUKCAR)

Professor Aziz Sheikh is the Principal Investigator on AUKCAR's research study 'My Asthma Story', launched in April 2016

Melissa shares how the project was taken from concept to launch, and why social media is being used as a crowdsourcing tool

Hi Melissa, welcome to Respiratory Futures. Could you start by giving an overview of the objectives and methodology of the study?

The main purpose of the #MyAsthmaStory study is to gather ideas from people with asthma about strategies they use to keep their asthma under control. We know that people living with asthma develop their own expertise about how to manage symptoms, so we want to invite people to share their stories. Our main objective is to make sure that our future research is grounded in people’s everyday experience and researchers can better understand key areas that still need to be explored.

To do this, we wanted to use a range of both traditional methods (survey) and crowdsourcing methods (via social media). In terms of using social media, people are invited to share their #MyAsthmaStory by uploading a video on Youtube or Flipagram, or to take part in a Facebook discussion on World Asthma Day. We know some people may have on-line access but may not use social media so there is also a link to an on-line survey they can complete anonymously.

We will also recruit people to take part in a paper-based questionnaire at a site in England and in Scotland. The study was launched on the 4th of April and ends on the 30th of June. Once we have gathered people’s ideas we will analyse the data and findings will be used to inform future research at the Asthma UK Centre for Applied Research.

What steps - and how long - did it take to progress the study from the original idea to its launch?

The study has been a lengthy process, largely because using social media in research presents both methodological and ethical challenges. An important component for us has been collaborating with the Patient Advisory Group at the Asthma UK Centre for Applied Research as well as our young person’s advisory group, SPEAK Asthma. Patient volunteers have been involved in every part of the process from identifying our research question and methodology to designing study materials, producing study exemplars and videos, and even handing out leaflets to pharmacies.

Crowdsourcing through different social media offers a way to collect data from people across a wide geographic spread and using a range of methodologies

We have also partnered with people who could bring particular expertise to the project. Early on we appointed a specialist in Digital Engagement to bring a fresh perspective about how to engage with people on-line. We have also established partnerships with Asthma UK and Pharmacy Voice to help support recruitment of the study.

There were also critical steps such as agreeing on our definition of ‘crowdsourcing’ within a research context and the best way to go about using it for our particular research question.

Was there something that prompted your use of crowdsourcing through social media in the study?

We initially considered a variety of ways to engage with people regarding their strategies for controlling asthma and found that crowdsourcing has been identified as a novel but emerging technique for use in research. Certain studies have highlighted its promise within participatory health initiatives and for generating potential research ideas in health research. We believe there are several benefits to using social media as a crowdsourcing tool, including reaching out to a greater number of people in a relatively quick timespan as well as offering people flexibility for when and where they can take part.

Using social media also offers creative ways for people to share their story – whether it is through writing, making a video, or creating a Flipagram. We are hoping that by offering a variety of ways to get involved, people can choose the tool that suits their story and situation best.

Patient volunteers have been involved in every part of the process, from identifying our research question and methodology to designing study materials

What are the benefits of collecting data digitally via social media?

This is one of the questions we are hoping to understand better through conducting this study. Our study is essentially an idea generation exercise, and we want to explore innovative ways for harnessing the expertise and wisdom of people affected by asthma to benefit research. The use of crowdsourcing through different social media offers a way to collect data from people across a wide geographic spread and using a range of methodologies.

Using hash tags and apps like Storify also make it simpler to bring together data from a variety of different sources to understand the broad picture of what is happening. In addition to informing future asthma research, we hope that our study will also help shed light on the benefits as well as the challenges of crowdsourcing and the use of social media within research.